Friday, January 3, 2014

I just came through what I imagine to be a normal part of the 'process' of parenting a special needs child. To say it was a minor period of depression would be a bit dramatic, although fairly accurate. I can pinpoint various factors that could have contributed to this (ie post-pardum hormones, the 13th moon) but the result is what is important. I've begun to see Freya in a new light.
Over the past year I have, for the most part, felt very positive about Freya and her development. I held what I thought were attainable expectations of her reaching her milestones. I even thought that I coped quite well as each notch on my time line came and went without apparent success. A few months ago I had begun to look through old pictures of when Freya was a baby, before diagnosis. Without going into too much detail I'll just say that now it is obvious to me that there was something different (I cringe thinking of using the word 'wrong'). At the time I was able to convince myself of various things, other than there being something different, and no one corrected me. While I truly understand why they wouldn't, it has not given me faith that when people say they think she is doing great they really mean it. As my doubts about my own perception of my daughter were beginning to build something very meaningful to this whole process happened. I met another PWS baby, 4 months younger, already doing what I had been working so hard for with Freya. This baby was walking.
In all fairness, 'they' say that the average age for walking with this disorder is 2 years and from the many families I've met on the internet that seems to be on the young side. But here is where my mind went into guilt mode. I wasn't doing enough therapy at home. I should've gotten her braces for her ankles. I should've started her on this supplement sooner. Blah blah blah. Many well intentioned people, myself included, pointed out that even in 'typically developing' children the age differences for reaching milestones can be drastic. But all of the little 'defeats' of the past year seemed to catch up with me.
Now I could see the concern in the therapists eyes when she asked if Freya ever seemed interested in other kids. Or the sound of shock in another therapists voice when I told him 2 specialists had said she seemed to be on the less affected end of the PWS spectrum. I began to notice that perhaps her attention and desire for playing with a basket and a pile of multi-colored string was more involved than just her inability to walk and do something more interesting. And maybe the fact that she use to say baby but couldn't seem to anymore was more serious than I wanted to believe. All of this began to build over a matter of weeks.
I wish that, in order for a more interesting and orderly story, there was some momentous occasion to turn the tides. But in reality it was in the middle of cooking dinner and silently watching my happy non-toddling toddler play with her basket of string that I realized, I mean, really realized, that Freya is not 'typically developing' and probably never will be. All of this time, through all of these therapies with their damn questionnaires about what milestones they're reaching at what age had me in the wrong mind set. I had been thinking of Freya as a child who is delayed. And if we work hard enough, and do the right therapies and give her the right supplements then some day she'll catch up to her peers and they can all go skipping down the road of 'typical development' together. In that moment in my kitchen, with the oil snapping in the hot pan and Billie Holiday playing in the background and Freya diligently taking one string out of her basket at a time to add to her neat pile of more string, I realized that Freya is a non-typically developing special needs child. And I breathed in deeply from the weight that was lifted off of my shoulders.
Perhaps this sounds like defeat, or giving-up. On the contrary, it is acceptance and unconditional love. And it is full of hope.

We aren't doing any thing differently. She still goes to therapy and gets her supplements. I still envision her being able to have a full life when she is older, one where she can fully function in normal society and be happy. I honestly don't believe that cognitively she is unaware of anything. Freya is incredibly social and loving. She is freaking hilarious and is saying new words often. She has started taking a few wobbly steps on her own. Amongst all of this I can also see some behaviors (and even some medical issues) that are apparently typical for PWS which is a whole other part of the 'process'.
But I'm not going to get upset the next time a therapist pulls out one of the obligatory timeline questionnaires. I'm not going to stress whether she can put the red ball in the red cup or how good she is at pointing. I'm going to do all of these therapies with her and more. But I'm not going to think of her as delayed. I'm going to follow the lead of her Dad and believe in her path and her timing and her ability.

I was talking about this with a friend on Christmas. Her words brought such joy to my heart that I have been thinking of them often. She expressed how loving Freya is and how she has this unique ability to make people feel so special. Because of this, she pointed out, Freya will always have people on her side routing for her.
I love how she phrased that, "the ability to make people feel so special'. We may not be able to check all of the boxes on her development evaluations, but I think this quality will help get her farther in life...at least where it counts.

What is PWS?

PWS stands for Prader-Willi Syndrome, a genetic disorder on the 15th chromosome. As stated at pwsausa.org :

Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children.PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist.